Skip to comments.Recent medical advances and Down syndrome: Two perspectives
Posted on 01/11/2014 9:47:48 AM PST by NYer
This week at CWR we’re featuring two articles on closely related topics: the spread of non-invasive, highly accurate prenatal testing for Down syndrome (and the expected increase in abortion of unborn babies diagnosed with Down syndrome) and recent advances in the search for improved therapies to treatand possibly reverse the effects ofthe chromosomal disorder. We think the two piecesboth interesting and worthwhile on their own, and particularly illuminating when read togethershed light on different aspects of the complicated subject of how individuals with Down syndrome are viewed and treated by our society today.
Yesterday we published “Putting a Face on Down Syndrome” by Leslie Fain. It offers an overview of the latest prenatal tests used to diagnose Down syndrome, which are growing in popularity and are expected by many to lead to increased abortion rates for babies diagnosed with Down syndrome. In light of this growing threat, many families with children who have Down syndrome are seeing the importance of keeping the real face of Down syndrome in the public eye:
So what has contributed to putting a face on Down syndrome in the cultural imagination? For Van Waites, a Mississippi native whose 11-year-old son, Cole, has Down’s syndrome, inclusion, education, and technology can be credited with much of it.
“Children with any disability are being more included in school, sports. Kids with disabilities, any disabilities, are not being shoved in a corner anymore,” said Waites. In the past, there was not information available to people about Down syndrome, he said. “Just 20 years ago, Down syndrome kids were institutionalized. [Today there are] so many special therapies out there to help kids.” …
Amy Julia Becker, who has three children, including an eight-year-old daughter named Penny who has Down syndrome…said she can see both positive and negative aspects to highlighting the accomplishments of those with Down syndrome. “I was thrilled to see a person with Down syndrome run a marathon, but at the same time, the fact these things make news [bothers me.] They are just like other kids,” said Becker. “This isn’t exceptional.”
Technology has shown itself to be a blessing and a curse for those with Down syndrome, according to Becker. “It’s a better time than ever to bring a child into the world with Down syndrome, if you choose to bring that child into the world,” she said, citing the technologies and therapies that are now available. “The flip side is that because of advances, people can abort them more readily.”
Our second article on Down syndrome, published today, is “Prospective Chromosome Therapy for Down Syndrome: Hopes, Fears, and Ethics,” by Sister Renée Mirkes, OSF, PhD. Sister Mirkes, who is the director of the Center for NaProEthics at the Pope Paul VI Institute for the Study of Human Reproduction, analyzes research reported this summer by a team of scientists at the University of Massachusetts Medical School, research they believe may lead to therapies capable of reversing some or all of the effects of Down syndrome.
[Researcher Jeanne] Lawrence points out: “The silencing of trisomy 21 by manipulation of a single gene in laboratory cells surmounts the first major obstacle to development of potential ‘chromosome therapy.’” Her hope is that “for individuals living with Down syndrome, this proof-of-principle opens up multiple exciting new avenues for studying the disorder now and brings into the realm of consideration research on the concept of ‘chromosome therapy’ in the future.” …
Lawrence also forecasts the development of drug therapies modeled on her research. Relying on her team’s greater understanding of what goes wrong with trisomic cells, drug researchers should be able to expedite the development of pharmaceuticals that duplicate corrective genome editing. A future drug, for example, could target the neurons of DS patients. With its corrective mechanism, the drug could help to raise IQ enough to allow these individuals sufficient mastery of the “3 Rs,” as well as reasoning and social skills, to enable them to, say, drive a car or to live and work independently. …
Professor Lawrence, revealing the personal moral values that guide her DS research , states that, of all the rewards she has reaped from the long years invested in DS research, the greatest is hope. Hope that the therapeutic possibilities of chromosome therapy might discourage abortions as it encourages pregnant women to bring their babies diagnosed with DS to term.
God bestows beauty in the eyes of a child.
I am humbled just by looking at her (but my eyes lit up at seeing that pic -- maybe it evens out?)
My 56 year old cousin is Downs. When he was little they generally just institutionalized these kids but John was blessed with two wonderful parents who researched and worked in the home with him throughout his childhood. I remember one therapy (I was just a kid too) - evidently Downs kids don’t naturally crawl so my aunt would spend hours doing what we would now call physical therapy with him when he was a toddler, moving his arms and legs and scooting him across the floor. Now he reads and writes, has worked for Wal-mart for probably close to 40 years and drives a car. He lives in a group home. I have a letter from him I need to answer. His parents are both gone but he has two sisters and a number of nieces and nephews who all love him.
That research is fascinating! Amazing that pharmaceuticals could mitigate some of the influences of the syndrome. And many parents may decide NOT to abort if they knew that their child could be fully independent, as an adult; I think that fear of leaving a child who cannot help him or herself, is one of the reasons many abort Down's Syndrome children.
It's not like 60 years ago, when families had enough children that one of the other siblings could care for a Down's Syndrome child after the parents died. Most families have only one or two children, so the expectation of care by a sibling isn't there, anymore.
What a beautiful child in that picture. Puts me in a good mood just from seeing her. The victory posture she has is a sign of her being happy and feeling empowered. It is not primarily a learned or conditioned response as it has been demonstrated that even blind people with no awareness of others doing this will assume this posture after making successful accomplishments.
The dilemma mentioned reminds me of the story Flowers for Algernon in a which a very happy young man with a low IQ is able to be transformed into a genius through medical science. Turns out that being smart does not make a person more likely to be happy.
I have worked closely with two associations for retarded citizens. My question has always been why hasn’t there ever been or discussed a real cure?
Beautiful story ...
Something too few see/understand. The love and joy that can be felt is a distinctly God-given set of traits and to be celebrated. I knew a mother of a Downs child and the child's eyes made my heart sing. I told her what a beautiful sight the child was. She acted like I had slapped her in the face and said, "Yeah, right", then walked away. Don't know if it was cynicism from others reactions to the child or if she really didn't see the beauty.
>> I told her what a beautiful sight the child was. She acted like I had slapped her in the face and said, “Yeah, right”, then walked away. Don’t know if it was cynicism from others reactions to the child or if she really didn’t see the beauty.<<
Bummer — you might be right. I haven’t even walked a block in her shoes, much less a mile.
We can only do our part and leave the rest to prayer.